Pages

Friday, April 29, 2011

My dear, sweet, wonderful hubs agreed to summarize our journey with Chase's HLHS diagnosis from his perspective -- from a Daddy's eyes. I could not BE more thrilled!!! I can honestly say I actually learned a thing or two by reading through hubs' synopsis of our journey with Chase and how HE felt -- from the moment of the diagnosis to today. I'm so very grateful hubs took the time to do this, not only for me and our son, but also for newly-diagnosed HLHS families (specifically dads) who want to know what this roller coaster entails. Obviously each journey is different, but I'm so very honored to present our journey, from a Daddy's eyes.

I’ll just start by saying, WOW!!! Being someone who is generally pretty observant, patient and analytical, the Congenital Heart Defect (CHD) community, and more specifically, the Hypoplastic Left Heart Syndrome (HLHS) community, is quite a place.

In reflection of almost 2 years now, I’m not sure you can ever fully prepare for the emotional and sometimes even physical events that you experience and in some cases literally run into or get hit with. If you are like myself and my VERY loving and courageous wife, you would be reading and inquiring about as much information as you can regarding HLHS that is sometimes as scary as hell and sometimes very inspirational. No matter how overwhelmed you get, don’t give up hope. There are a lot of VERY PROMISING things going on and A LOT of people and organizations out there VERY WILLING to provide support. The HLHS world does not comprise of a single event but rather many events or what I refer to as a journey. I’m sure I’ll forget some of the specific details, but wanted to put in writing some of the experiences, thoughts and feelings I had from an HLHS father’s perspective.

When my wife was approximately 20 weeks pregnant, we went to an OB appointment where they were documenting all the major measurements they typically do at this stage of the pregnancy. After the ultrasound, we were asked to go to a room and wait for the doctor, as is the normal process. So, we waited, we waited and we waited. Finally, the doctor came in to mention they scheduled us an appointment to see a high-risk doctor that would examine our son’s heart in more detail. When asked why, it was a simple statement that we didn’t get good pictures and they specialize in this process and have better equipment. We thought that was a little odd, but at least for me, I think I blew it off a little or maybe suppressed any deep thoughts to what it could be. A few days later, we had our appointment and learned our son had HLHS and were presented with a not so much optimistic picture. Insert a brick wall and another appointment to see another doctor who specialized specifically in CHDs and HLHS. I again don’t think I digested yet what this truly meant and I guess I kept waiting for the curtain to be pulled back for someone to jump out and say, “sorry, just joking” or, “sorry, we were being cautious, this really isn’t a big deal.” A few days later was the confirmation that our son had HLHS and a little more information about what this meant, not that we came even close to understand it. This is when another brick wall appeared or guess more like a cement wall that knocked us off our feet. The next week for both of us was very emotional where I was shocked, stunned and scared for our son, my wife and how in the world we would get through this.

The next several weeks for me consisted of going with my wife to cardio pediatric visits, listening to what my wife found when researching HLHS, mostly via blogs, and in some cases, hospitals. As the days passed, I like to refer to my state of mind as preparing to go to war! (For the record, I’ve never been to war nor was I or am I in the military and can’t even imagine how difficult it is, so definitely not trying to make light of that responsibility and experience. I only have the utmost respect for all service men and women.) I became very focused and driven to find and create an environment that would be safe and hopefully supportive for our family before, during, and after our son is born. We decided fairly early on we were going to go as a family to wherever we needed to for our son to have the best care he could. This is where the war plan took off for me: which hospital to go to, where to live, how to get there, best environment for each of us, monetary resources, work commitments, etc… No surprise, there wasn’t a handbook out there for us to refer to in assisting us make the needed decisions required nor a single resource to educate us on what we needed to know. It’s a little bit of joke between my wife and I, but I would always joke by asking, “where is our welcome packet,” you know, that showed places to stay, sites to see and a map of the grounds, like at a vacation spot.

I would say for the 2 months prior to our son being born, I continued to become even more focused on implementing our game plan and guess I would even say emotionless, assuming that was the anxiety and adrenaline kicking in. I would also say I became even more protective for my wife’s feelings, both in the moment and in the event things didn’t go well in the upcoming weeks and months. We did not have the typical baby shower parties, became somewhat of hermits and at least I can say, somewhat blunt with people on what could happen in the upcoming days, which made them uncomfortable I suppose. This was more of a protective measure for my wife than myself since right or wrong, at the time I didn’t think it was healthy for her to have people approach and say, "I’m so sorry," like the worst possible scenario already occurred. I also think it is my personality to instinctfully want as much control as possible when things get tough and stressful. Guess a good sports analogy for this is, I want the ball during those tough, intense times rather than to be standing on the sidelines, watching as things unfold.

After relocating near the hospital and then being blessed to see our son be born, the next several weeks were definitely tiring and during certain times, awesome, intense, aggravating, etc… Basically, every emotion imaginable could and in some cases did present itself each day and even hourly. I felt like I was always on guard and ready to attack whatever came in my direction all in the name of keeping my family safe. I also realized very quickly, this was the time that my wife and I could learn a great deal from the awesome doctors and nurses helping our son. Now, in saying this, please don’t get me wrong, it was also during this same time it was reaffirmed to us that we are our son’s best advocate and that there is nothing wrong with questioning the whys, whats and hows of things, with respect of course. We were included to be a part of the team by the doctors and nurses whether intentionally or not. This was a great relief to us since we did not feel like we were in the dark about things and also gave us comfort to know our son was in good hands, not concerned to ask questions about things and would even say, we want to know as much as possible from the worst to the best scenarios. There was a lot of waiting during the days after his first surgery while he rested and recovered, so I spend a lot of time watching the monitors and developing my own trend graph in my head that was a bit of game with the surgeon who performed his first surgery. He’d stop by to say hi and see how things were going and before looking at the charts, would ask me with a smile, "how’s it looking?" I’d play along giving a very brief playful summary ending with, “…but I’m sure you’re looking at a few more things than I am.” This definitely helped me diffuse some anxiety if nothing else for a brief moment in time. However, I mention this since we unfortunately learned after we went home and started the typical pediatrician visits that they don’t specialize in this field, nor know much about it. This is to be expected since HLHS is very rare and very complicated, but at times it was a little frustrating to have to remind medical personnel that using the standard care for the majority of children will not work for HLHS kids, hence the importance of being our child's advocate.

After being discharged for a month and going back to the same hospital for a same day follow-up appointment, I distinctly remember looking at my wife as we walked down the hall with our son and saying, “I feel like we are home.” For many this would seem very odd, but for us, knowing what we’d seen and how the process works, it just seemed natural...

Thursday, April 28, 2011

I am SO SO SO excited to share with you guys a fun little big ol' project I had been working on for the past week or so. It's my very first official quilt! Like, seriously, cutting out squares, sewing them together, layering the top, batting, then bottom, "stitching in the ditch," and ((grumble)) binding, too! It was a MAJOR project and I had NO IDEA what I was getting myself into.

See, I saw this adorable quilt "kit" at good ol' Walmart, and immediately LOVED the various black and white patterns. It looked like fun! But you have to remember something: me and numbers don't mix. Seriously. I have no idea about measurements (and why am I sewing then??) and didn't even think twice when I saw (if I even saw it, which I don't think I did) that it said, "Finished Size: 48in x 64in." I had no idea what that translated to in, say, "feet" (which is much easier for me to picture in size vs. inches).Whatevs!

I got home, pulled the fabric out, and started cutting 8 1/2 x 8 1/2 inch squares. MUCH bigger than the 4 x 4 inch squares I had cut for a previous (and much less involved) quilt project. And there were a LOT of squres. It didn't take long for me to realize this project would be a bit bigger than I had imagined. But it was okay -- it'd be my very first quilt and I was totally okay with throwing myself into it, feet first!

Everything was going quite well, until I realized I'd need a walking/even feed presser foot, which my mom's old Singer I had been using did NOT have. I ordered one from Amazon, then waited. And waited. And waited some more. I got very antsy and, I'm not sure how or when, but I decided I needed a new sewing machine -- one I could call my very own.

After a few days of research and calling local sewing shops, I decided to go against what ALL of them told me (the Baby Loc store told me I simply HAD to buy a Baby Loc; the Husqvarna shop told me I absolutely must purchase a Husqvarna, etc. and decided to buy the Brother SE-400 -- a computerized embroidery and sewing machine! I have NOT for ONE SECOND regretted this purchase!

I ordered the walking presser foot for my new Brother and before I knew it, I was quilting! Like, for real quilting! It was so easy, exciting, fun and productive! I couldn't believe I was capable of producing such an amazing keepsake!

I had already decided early on during the process of making this quilt that I would be giving it to someone very special. A sweet, sweet woman named Heather, who happened to be Chase's physical therapist and was able to teach my son how to walk! She's meant very much to me and my family over the past almost-year that she's been coming over for weekly visits, and it's amazing the progress Chase was able to make in such a short period of time under her care! So I was focused on making my very first quilt to give as a gift to wonderful Miss Heather!

It didn't turn out absolutely perfect, which of course was my goal (I love perfection!), but I figure it has some "first time quilter" nuances that will make it that much more special. Right? Right?? Well, that's what I keep telling myself anyway.

So without further ado, here are some pics of my finished product!

The quilt top. Love the black & white patterns!

A special little touch... I embroidered Chase's name inside a heart in the bottom right square. Just a little something to remind her of Chase since, after all, he was and will always be her very most favoritest patient ever! Haha!

Funny story about the embroidering... I had tested and tested and tested again the design, sizing, positioning, etc. on scrap fabric to make sure it'd be PERFECT before I embroidered onto the quilt. So I got it exactly how I wanted it, then went for it! When it was finished, I took it out and looked it over, only to see I had embroidered: Chasc. Yes, that's right. A "c" instead of an "e" in Chase's name. Lovely. I removed the stitches for the "c" and then had the joy of setting it back up into the machine and making an attempt to line it up just so in order to have the "e" placed at the exact spot where it should've been to begin with. Needless to say, it was NOT perfect. You can see the "e" is a bit lower than the "Chas" but I don't care! I decided that since Chase doesn't have a perfect heart, there's no reason to think his name inside a heart on this quilt should be perfect, either! I love this!!!

The binding. The biggest, most royal pain in my rear. It definitely didn't turn out as perfectly awesome as I had hoped, but this was only the second time I've done binding (the first was the satin blanket binding that pretty much binds itself) and it was by far the hardest part of the quilting process, but still manageable. I'm sure I'll get better with more experience.

The backing print.

I'm so pleased with how this project turned out. I sure hope Heather agrees!

Tuesday, April 26, 2011

Happy 18 Month Birthday, sweet boy! I cannot believe it's been a year and a half since Daddy and I made that first (of oh so many) drive from our rental house in Charleston to MUSC for your birth. I had been so caught up in what was going to happen to you after you arrived, that I honestly didn't start to think/prepare for the actual process of getting you here until the night before!

You've been through so much. You've shown the world what a ROCK STAR you are by surviving two heart surgeries and two heart catheterizations, as well as a bout of RSV! No one would ever know what you've been through unless Mommy or Daddy were to mention it. You are so amazing and you make me so very proud to be your Mommy!

You are the happiest little guy EVER! You are always so smiley and happy, unless you are hungry or tired or (heaven forbid) somebody tells you NO. You love your big sister, but sure do get tired of her when she pesters you. You love being with your Mommy and Daddy, which isn't surprising since you haven't been able to spend too much time with anyone else yet. Except maybe your Mona. You love to hang out and play with Mona. She sure loves to visit with you and is always willing to play with you and your sister so Mommy and Daddy can have a night out every once in a while.

It's been so much fun for me to watch you get to experience new things now that we're out of quarantine season. You are inquisitive and enjoy learning new things. You are such an amazing boy!

I would have NEVER guessed 18 months ago that I would see pictures of you running around the yard, popping bubbles, smiling from ear to ear!

When you get overwhelmed by things, Mommy is always there for you to help comfort you. While new things can be exciting, they can be scary, too, but Mommy will always be there to hold your hand and feed you some yummy chocolate to ease your mind...

You like to get your own way. All. The. Time. You get this honestly, though. Mommy's the same way (and Daddy, too, but don't tell him I said so)! It doesn't take much more than someone shaking their head "no" in your direction to result in a meltdown of epic proportions...

You're a relatively quiet little guy. You don't like big crowds or lots of noise. It takes you a few minutes to warm up to a new environment or when you're outside of your comfort zone.

But before long, that gorgeous smile of yours lights up your face and lights up the room!

You love to eat. A lot. Almost all kinds of bread. Cheddar cheese cut up into cubes. All things Gerber (crunchies, yogurt melts, cereal bars). Yogurt and applesauce are some of your faves. And don't get me started on juice. I don't think you can survive more than 10 minutes without guzzling a sippy cup of juice!

Oh, and the cranberry sauce. Can't forget the cranberry sauce!

I love watching you learn. You're so laid back and enjoy taking things in at your own pace.

Every now and then you let Mommy love on you and be silly with you. I cherish those times more than you know! You are such a fun and silly little guy, and you own your Mommy's heart!

Speaking of trying new things... Daddy got you a really cool bike seat and Hot Wheels helmet so you could go on bike rides with us and your sister! You definitely were not a big fan on your first ride last night, but once the bike was moving, you had a great time!

Sweet Chasey-poo, your Mommy loves you more than you'll ever comprehend. Your Daddy loves you like crazy and your big sister--as annoying as she can be at times--loves her little "bruhder" bunches.

We are all so grateful to have you in our lives. While I wish I could take away the pain you've experienced and the uncertainties that lie ahead for you, I wouldn't change one moment of my life from the second you were born 18 months ago. You are my sweet, precious, lovable son, and God gave me the greatest gift when He gave me you.

Happy 18 month birthday, sweet boy. Thank you for bringing so much joy to my world!

Thursday, April 21, 2011

If you've ever wondered over the past 2 years what YOU can do to help us with our HLHS warrior, Chase, NOW is your chance!

Support Sisters by Heart.

You may not have been able to help us by keeping LO during Chase's surgeries or heart catheterizations; you may not have been able to hold our hands in the PCICU waiting room while our son was undergoing heart surgery; you may not have been able to bring over a meal for us after returning home from a hospital stay; you may not have been able to stop by to visit during "quarantine season."

But there is something you CAN do.

Support Sisters by Heart.

Make a donation today. Any amount -- none too big or too small -- will help us bring HOPE to families who find themselves in the same dark, scary place we were in when we first learned of Chase's special heart diagnosis almost 2 years ago.

You may not have been able to support us the way you wanted to. But you can now.

Tuesday, April 19, 2011

It's been two months today since the world lost a sweet, precious little boy named Travis. My heart continues to ache for his family, for the devastating loss they've experienced and for their struggle to make it through each day without their smiley little Trav. I hate this hopeless feeling where you want so very much to help someone who is struggling, yet truly there is nothing you can do to bring back the joy and happiness that was once there. I want to just send hugs to Nicole and Roger every moment of every day. I want them to know that little Travis made a BIG impact on the world and he will NEVER be forgotten.

Each day, when I look at my sweet Chase, I can't help but think of Travis. They were only 3 days apart so right now, Travis should be doing a lot of the same things as Chase. My heart aches that Nicole and Roger aren't able to experience life with Travis.

I feel powerless to help the DiCarlo family, other than continue to keep them in my daily thoughts and prayers. But I figured I'd write up this post and provide a link to their blog so you can send them a little note to let them know you're thinking about them and praying for them, too. Obviously there's nothing anyone can do this side of heaven to heal their broken hearts, but knowing there is a huge community of friends, family and even strangers who are lifting them to the Lord in prayer will hopefully remind them that they are not alone in their pain.

Please take a minute to stop by the Team Travis blog and let Nicole and Roger know you are thinking of them during such an unimaginably painful time.

Friday, April 8, 2011

Well, it's no Vera Bradley, but I finished the messenger tote for Stephanie, the winner of my first ever blog giveaway ever, and I think it turned out super cute! Stephanie chose the Crazy Flower print for her tote.

Thanks again to everyone who entered and played along! I had so much fun with this! Now it's time to get on to several other sewing projects that I have waiting on me. I'm so excited about them, but I can't share much about them on here... yet. ;)

Thursday, April 7, 2011

Stephanie said, "I would love to have the crazy flower print as my messenger bag! I am sure everyone would love it on my unit! I work on the Heart unit at Children's Hospital in DC!"

Gotta admit I love the randomness yet NOT randomness of this drawing. I mean, of course I used random.org and it was a COMPLETELY random winner selected. But how NOT random was it that the winner works in a Children's Hospital heart unit!? Yay! I definitely feel like I'm spreading a little bit of Chase love to the Children's Hospital in DC! :)